I have been fighting PSP for a long time now. Refusing to bow, when things have got hard, until matters have forced me.

As some of you know, last weekend I was "forced" yet again, to kneel before, this horrible master and start puréeing all S's food and thicken all drinks.

The result.... S is eating better than he has done for a good couple of years and so much quicker. Is now enjoying his morning coffee, I can't even began to remember the last time he drank it, although I dutifully make him one, every morning. Needless to say, his bowels are a lot better, although that might be the dynamite the DN's have given him. Is actually saying he is has enjoyed a meal, the sounds of approval, while eating, is great!

The excitement this morning in the supermarket, when I asked him what desserts he fancied, now I am actively looking at the calories chart to get the highest, instead of the lowest.

Oh the wasted hours, trying to get him to eat, the stress and the tears. I thought I was saving him from the final kick in the teeth, forced to eat baby food, but he is thriving on it!!!

So from being really upset and dreading the fuss of puréeing all meals, it's suddenly a pleasure to prepare his meals again, worth the extra time it takes. The dishwasher working a bit harder, my stomach and eyes aren't happy bunnies, with all these goodies in the house, hey ho, small price to pay. May save us having to make the peg decision just yet!!!

Don't worry I am ducking, no doubt something else is about to bite me!

32 Replies

I'm so pleased Heady. I thought you'd soon get in the swing of preparing soft food. S must feel so much better not struggling to swallow. Stand up straight. It may be a long time before you are hit with something else and you don't want a hunched back do you.

Getting use to it! Very fiddly, making sure everything is attached. But S does like being in charge of the electric winch. Certainly no worries about him falling, when getting into the car now. Thought I would be able to go out more, but that's not happening, perhaps if the weather picked up, I might feel more inclined!!!

Don't agree with your heading, Heady, you are a mind of information as you've helped so many on this site with your knowledge and experience, the down side is unfortunately it is all due to this cruel disease. xx

Heady don't forget if you're going for calaries and he likes angel delight measure out your milk (whole milk) you then can add milk powder and complan (all extra calaries). You can also use angel delight to thicken milk a pint of milk to one sachet makes a thick milkshake. I also get tinned rice pudding and blend that with the complan (just add the complan powder in blender)

Our dietician got us a prescription for "pro cal shot" and that works out at 100 cals for a 30ml shot and you can put that in drinks and food. I put some on his weetabix in the morning and then another shot goes on his rice pudding or his angel delight and the last one goes in a complane shake.

I think at the moment he is well over what he should be having. Haven't checked his weight in the last couple of weeks, but looking at him, the weight loss has stopped! I will keep in mind what you have said.

Well yahoo! Nothing but for a blender and some thickener is solving problems at your house....and many things just need to be mashed! Are you trying any smoothies out? they are sweet and nutritious at the same time! I am so glad to hear S is feeling better! I am sure he is happily surprised too! And like Nannab said, make sure you are standing straight up ! Don't worry about tomorrows problems today .......rejoice and have a a high calorie dessert!

Isn't it silly Heady, how we try to hold back the tide when in fact it makes life alot easier and more pleasant. It was like that with the walker and wheelchair for Ben, he was just getting used to using them when he went and broke his hip. He has been choking quite a lot in hospital and they have said thickened drinks and yogurt to help get the pills down. I think it is because he can't sit up really straight to tuck in his chin when eating to help keep the airways closed.( as advised by the speech and language therapist) glad you have got a bit of a break before the next trick up psp's sleeve is played on you both. Love and hugs. Kate xxx

So glad things are looking up. Like you, I know nothing. After saying that B will not eat creamy soups, he ordered leek and potatoe soup today , with granary bread, when we went out with our daughter. ! ! ! X

Happy he and you are doing better with the pureed food. My hubby is still eating but more falls. His memory is horrible, which at this point drives me crazy. It's like living with a large 3 year old. BTW, he has lost a lot of weight. Anyone else dealing with that?

Someone on here once said that red wine with thickener tastes just the same. We've not tried it yet, it's weird in coffee, but as with anything, if it makes life easier for our loved ones, then we try it! My mum tends to blend everything together and some things come out quite grey but I've been assured it tastes ok And I really don't want to go on about this great tiramisu recipe, but with mascarpone, cream, cookies, chocolate AND amaretto (no raw eggs, I thought the risk was too big)... well, it's just perfect for lots of calories and it doesn't need blending! My dad had lost about 20lbs in the first year I came back to live with him, it was scary, but it's stabilised since then, I think the food mashing, blending and pureeing made a big difference.